Autism

Building Bridges

Our last sib interview of the trip was with a lovely 27 year old named Audrey. Audrey's sister is 3 years younger and has both autism and Moyamoya disease which is a condition where the arteries around your brain get progressively clogged over time. During our interview, it became clear what a wonderful advocate Audrey is for her sister as well as the sibling community as a whole. When she was in high school, Audrey started to worry about how she could integrate her sister into her life outside of the house. She desperately wanted her friends to know her sister but struggled at first to think of the right way of going about that. Eventually, she had the brilliant idea of starting a social skills club at her middle school. Listen in for her description of that experience:

As a result of her experiences with the club, Audrey was able to have a real shift in terms of the way she viewed her relationship with her sister. She spoke to how maternal she often felt when she was much younger but how she eventually transitioned away from that role. These two clips describe how this transition came to be.

At the same time as Audrey was creating new social opportunities for her sister and her friends, she was also helping educate parents in the Korean community about sibling issues -- what a champ!

Audrey was sure that her next step was to become a disability right lawyer in order to continue advocating for people like her sister. But, that's not where she's at today. Here's her story of her professional progression.

One major theme in our interview with Audrey was communication (and at times lack thereof) between parents and siblings. The next clip is Audrey's personal opinion about why there are often barriers there.

In terms of her future, Audrey craves having a network of sibs her age. She doesn't necessarily think that support groups are necessarily sustainable for people in her age range (18-35) but would love to have a simply network of people that she would know she could turn to with questions or concerns. One of our major goals is to create some sort of community for people in that exact age range so it was nice to hear that come out in an interview as a major need.

Finally, we asked Audrey our last question: What's a question you would want to ask other sibs? Here's her response.

Our interview with Audrey was a fantastic way to cap off our trip and we couldn't be more thankful for her honesty and advocacy on behalf of sibs everywhere.

 

Claire

In the land of Portland...

During one day in Portland, we had the pleasure of interviewing three different women about their experiences with a brother with autism. Let's introduce you to our cast of characters: Zicra -- has a 43 year old brother, low functioning autism, nonverbal

Liana - has a twin brother (they're both 11) with high functioning autism

Elisabeth - has an older brother in his 30s with mild to moderate autism

Essentially, we had the opportunity to interview 3 women, at different stages in their lives, as they navigated the experience of having a sibling on the spectrum.

Our morning started with Zicra who brought us to one of her favorite tea shops in Portland. Her interview was full of energy and warmth and she couldn't help but smile every time she spoke of her brother Joseph Jonah, or Jojo for short. Listen here for her description of Jojo, their relationship, and her parents' openness with her about Jojo's situation.

 

Zicra has many fond memories of her childhood with Jojo but she told us one great story in particular.

What became clear early on in her interview, was just how tight knit Zicra's family was. She eventually brought this up herself, noting the ease with which her family used an us against the world mentality.

Because they were always so close growing up, Jojo struggled to come to terms with the new people in Zicra's circle including her husband and her children.

However, despite the recent adjustments, Zicra felt so positively towards her brother and his impact on her life. Perhaps most significantly, her experiences with Jojo allowed her to embrace early that it's okay to be different, an idea that many others struggle to graspe their whole lives.

After Zicra's interview, we headed across Portland to interview Liana. Liana also told us about the strong bond that she has with her brother. Since they are twins, they spend the majority of their time together, not apart. After the interview, Ellie remarked to me that I was probably very much like Liana when I was her age. And man was that an awesome compliment! Liana was so great -- a self-described book worm, extremely eloquent in her description of her brother's challenges, protective of her brother while still maintaining a sibling-style relationship with him, the list goes on and on. What seemed to make the difference for Liana was her chance to go to summer camp every year with her twin. The camp that he attended for kids with special needs had a sibling chapter that Liana loved to be a part of. Through that, she was able to meet and bond with other sibs. During the year, she keeps up with her sib friends and often shares funny stories of her brother as well as any challenges that may arise concerning her family with them. I can't wait to see where this kind, well-spoken, and funny woman goes later in life! Keep us posted Liana!

Finally, we met with Elisabeth at a coffee shop near our host's house. Elisabeth is an occupational therapist who also had many fond feelings towards her brother. She told us that he was "all around just a really great guy" and lovingly described his lifetime interest in sports and cooking.

She attributes her closeness with her brother to the fact that they were the two "big kids" in the house (they have two younger sisters) and that they tend to both be very laid back people.

I loved watching her smile as she talked about her brother's experience in high school. Watch the clip for a rare description of a person with autism's positive experience with public school.

Like most sibs, Elisabeth finds certain aspects of having a sibling with autism to be challenging. The clip below has her very thoughtful description of the specific challenges that she feels surrounding her brother.

Elisabeth has a best friend who is a sib. Below, she told us why she finds that specific friendship to be so valuable.

The current goal for Elisabeth's brother is to get a job so that he can begin to move towards independence. However, in this economy, that task has become even more arduous.

On the same note, Elisabeth thinks that what's really necessary is a shift in how society views people with developmental disabilities.

One of the reasons we decided to group these three interviews together was the common thread of siblings having a positive relationship with their sibling with autism. In many of our other autism interviews, we have found that the sibling in general has struggled very very much to create and maintain a sibling bond with their brother or sister. As a result, we knew it was necessary to profile these women in order to diversify the narrative about what it's like to have a sibling with autism. We are so grateful that we had the opportunity to meet and speak with these three Portlandian women and we wish them all the best for their future!

 

Claire

A Myriad of Roles

Another theme we have seen over this trip has been the avid participation of sibs in the arts world, specifically theatre. I, too, was an ardent member of the theatre community for many years up until high school. For me, and for many of the other sibs involved in the arts we have spoken with, the world of performance made for an excellent way to get out of the house, steal some much-fancied attention, and make a name for myself outside of the one my family provided for me. In her case, she grew up in an artist community, immersed in the drama, so to speak. I met Hannah* at an acting camp that she and I attended for many years. By the time I found out that she was also a sib, she was already a counselor while I was still a camper. Having said that, this story has nothing to do with performance on the stage. Hannah has been watching out for her younger sister, Julia*, for most of her life. Like many others, Julia has been given a range of diagnoses over the years, but her current one is Asperger’s. On that note, Hannah speculates that “a different diagnosis doesn’t mean that she’s different, it just means that someone is calling it something else” and is basically just for medical and services purposes… a firm diagnosis is really only good for legal and political reasons.” I mention this because it is a huge part of Hannah’s role in Julia’s life. Both Hannah and her parents all share power of attorney over her sister. We asked her what it is like to play such an integral part in decision-making in her sister’s life. She responded that she thinks she offers up another perspective in those choices, which she believes is helpful to her parents.

We spoke with Hannah in great detail about social issues regarding her sister. “Watching the difficulty she experienced in trying to assimilate into the culture of our school put me in this position of, rather than making friends because I enjoyed it, I went about making friends so that other people had friends. I would always find the person that no one was talking to.” Similarly, she chose her friends based on comrades whom she knew would be okay also spending time with her sister. She told us that Julia doesn’t really have any friends of her own; most of them she shares with Hannah. It took Hannah a long time to figure out what type of relationship she and her sister could truly have because she is constantly protecting her sister and has seen what happens when “her social situations spin out of control."

Like many others sibs, especially those we have interviewed who grew up in metropolitan areas, Hannah immersed herself in academics. There was the unspoken expectation that she would be self-sufficient and “to me that translated into making sure that I never got in trouble and I always had great grades and I never created a situation that they had to deal with.” “Rather than succeeding in other places in my life and having that be enough, I think I’m still very fixated on academic success… because of her,” she told us. And, she has taken this philosophy with her past high school. Now a triple major at a prestigious university (psychology, neurobiology, microbiology), she strives to understand the human brain while also running a bagel business and a theatre company. And, she just got married.

While it appears that her life is a stimulating, constantly busy, rollercoaster, she talks about how intensely growing up in her household affected her personality now. “I’m reluctant to talk about myself with people, which I think comes from most of my concerns as a kid being about [Julia] and whether or not she was okay, whether she was safe, and sometimes that makes it hard to have social interactions that are comprised of small talk because I don’t quite know…sometimes it’s hard to remember that information about me might be pertinent to a conversation.” She told us how difficult it is for her to speak openly about her feelings in her family. “I always felt like it was my job to not have feelings about it or want to talk about it,” a sentiment we have unfortunately seen in many other sibs’ reflections on growing up. Though she grew up in the theatre world, she now prefers the spotlight not to be pointed on her.

“It’s hard to know what to want sometimes,” she told us regarding her sister. She told us that she struggles with some of the decisions her sister makes and how they don’t have that much in common and how her sister has put her through a lot which has made it arduous to have a relationship with her. “Letting go of the really strong desire to have a sibling that I could be unafraid of letting my guard down [with],” was a notion she had to come to later in life when she realized that she probably would not have the “typical” sibling relationship with Julia that her friends and cousins had with their siblings.

While I had already looked up to Hannah from her amazing camp counselor skills, this interview solidified an even greater appreciation. Like many other sibs we have spoken with, Hannah, it seems, questions whether or not she has the “right” to be affected so strongly by her sister. ”I hate to say, put me through a lot, but it feels like that sometimes,” she told us honestly. Quiet and thoughtful, her many facets highlight a reflective nature that is continually striving to learn more about “raising the awareness of the holistic nature of a person’s life.”

*Name has been changed

Quotes from our online interviewees

Early on in our journey, we realized that we most likely would not be able to interview everyone who reached out to us. Some people were out of town when we were in their city or lived in a city that was not on our route and so would be out of our reach. However, we didn't want to prevent those people from being able to express their feelings about being a sib. So we created a "Share Your Story" tab on our blog with the hope that people would fill out the online form with information, anecdotes, and raw emotion about their own sib story. And fill out, they did! This post will be composed of short tidbits from each sib who has completed this form. Hope y'all enjoy their colorful and honest tales of growing up with siblings with various disabilities and differences.

***

Rebecca from Lexington, MA -- one of 9 children, has a brother with Down Syndrome who is 44.

"Probably the best memory when we were children was bringing him to Special Olympics. It was so amazing and mind blowing to me to see him accepted and part of a group. And, he competed so vigorously."

"I find it shocking to think I really don't know other siblings. (other than my own and we are a great support for each other). I have never had support services, but think that Special Olympics has contributed a lot to helping generate a good perspective."

"The hardest thing about having a handicapped brother is not the handicap. It is the social rejection. However, I think the world has changed so dramatically. I can hardly describe the contrast between when I used to take him places when he was small and now! The ADA has had so much impact in changing social values.  I hope society will continue in the vein, being inclusive, and accepting, and then the "burden" will be so much less so." 

***

Helaine from New York City - has a brother with schizoaffective disorder and Aspergers who is 29.

"However, when he was 21, he began to have outbursts, often violent episodes, in which he would wake up in the middle of the night screaming, and often punch or push my parents. My room shares a wall with his, and so often I was startled when he woke up at 2 or 3 am, and could not go to sleep fearing that he was going to hurt my parents (he has never touched me during an episode.) It was, for lack of a better phrase, scary as hell. However, I was told that what happens in the house was nobody's business...and as a 14 year old, I didn't think twice about that." 

"For YEARS my parents yelled at me for being "snotty" to my brother in mixed company, but for me, that was my way of acknowledging that my brother and our relationship was not normal. As a 14 and 15 year old, I couldn't articulate why I had so much trouble being nice to my brother. But now I can say that treating him nicely would have been going along with my parents and putting on a show. My parents have been so keen on keeping the severity of his mental illness a secret, but after some time holding it in became too much for me."

"There are very few people I feel comfortable talking about my situation at home to. But I definitely do feel the closest to my friends who know, and always feel as if I am holding back a huge part of myself from friends who don't."

"I was happy to get out of the house for college four years ago, but the transition between college and home each winter and summer break was always difficult for me. At school, I was progressing, growing, having a great time. But then I'd come home and be reminded that nothing is ever going to change for my brother, and also be reminded that he can be violent at times. I felt bad for him, for my parents, it just made me sad."

"I graduated #1 out of my 732-person high school class, and that the "me" my parents saw, I couldn't tell them what I was really feeling underneath. In the past few months, I have been trying to discuss with them the impact my environment has had on me, but so far no good. However, now that I am starting to talk about this more to others, I hope to ultimately be able to get through to them."

"I just told you all of this to express to you, as a sib, that I feel how a parents handle their son or daughter's disability can greatly impact how the sibling feels. I do feel that my parents do everything they possibly can and more for my brother; however, I think they've neglected to realize how much of an impact living with my brother has had on my life."

***

Jill from Nazareth, PA - has a brother with Down Syndrome, autism, celiac disease, epilepsy, a heart condition and other medical issues who is 20. 

"I have many positive memories of Kevin. Kevin loves going on amusement park rides and I referred Kevin for the Make a Wish Foundation. Kevin got a wish to go to Disney and my family went to Florida in May 2011. We had a fantastic time and I have never seen Kevin happier. I felt blessed that I was able to help get that opportunity for Kevin."

"As a child, I remember trying to always be perfect so my parents wouldn't have to worry about me. This has carried onto my adulthood and I have anxiety due to always trying to be perfect. I have taken a lot of the responsibility for Kevin and I am almost like a second mother to him. This can sometimes be very negative as well as positive."

"I have been very upfront with my boyfriend and told him as soon as things started getting serious. I told him that I come with this baggage and one day I will be in charge of Kevin when my parents can no longer take care of him. My boyfriend was interested in moving about 3 or 4 hours away and working on a farm. I told him that I can't because I wouldn't want to be that far away from my brother. I have this guilt inside of me that I feel it would be wrong for me to move that far away."

"I understand that things could always be worse and to appreciate things in a different way. I have a connection to the special needs community. I am proud of Kevin and am amazed everyday by him. I have a hero who is my brother." 

"I think it is important that young siblings would be reached out to and know that they are not alone. How they may be feeling is normal and they should be able to have someone to talk to."

***

Erin from Wrentham, MA - has a sibling who is mentally and physically disabled and is 14.

"My little sister is my whole world. That is pretty much the only way I have ever described my relationship with Shan. We also have 2 older brothers that show up when they feel like it but for the most part are not around for her or for me. At this point I am Shannon's other parent. My father passed away 3 years ago leaving my mom and I to make sure Shannon is ok. This has been a change in that if my mom is not around I am the only other person there for Shan."

"Pretty much everyday with Shan is positive. You can't help but be happy when Shan is with you. When you walk in she gives you a hug and barely ever stops smiling. That's not to say internally I haven't had negative struggles."

"I would want to know if they receive support from their other siblings with their sib be able this has always been the thing that bothered me most."

***

Ellen* from Boston - has an older brother with PDD- NOS who is 25.

"However, as we entered our teenage years, my relationship with L started to get really strained, as he just seemed to not be motivated or (in my opinion) trying hard enough to grow up and stop letting my parents make decisions for him or help him with things I assumed he should have been able to do on his own by that age."

"Our relationship today is still rocky at best - as bad as it sounds, we seem to get along best only when we're not around each other...I guess when we feel like we miss each other is when we actually appreciate our siblingship."

"In fact, I think some of the issues in our relationship come from the resentment I had for a long time with what I viewed as my brother's "refusal" to be normal, coupled with my parents' "refusal" to admit that there was something "wrong" or "not normal" about my oldest brother. I was confused about why my brother would act so anti-social or childish when my parents never clearly stated that there was anything different about him. And when it got to the point where I realized some of my brother's behaviors were just too odd to be by choice, I was really frustrated with my parents for trying to pretend everything was normal when it wasn't, and I think I projected a lot of that frustration onto the relationship between L and I."

"One positive thing about having a sibling with a disability is that when they succeed at something, everyone comes together to celebrate. A particular instance of that for me was when my older brother finally finished his college requirements and earned his degree after almost 7 years of classes. Getting to join in his joy at seeing himself succeed at something he'd been working at so persistently alongside the whole family was a great moment. "

"Particularly for Thanksgiving dinner - my parents love to have guests over, but I'm always uncomfortable through the whole meal because my brother talks extremely loudly and dominates the conversation with ill-placed jokes and obsessive sports talk, and he refuses to eat anything other than peanut butter sandwiches for dinner which always takes some explaining to guests when there are trays of delicious food in front of him"

"I also don't talk about my brother too much with those who don't know him, because I honestly don't know how to explain him to other people."

"I've really been drawn to this population since I was in elementary school, and right now I'd like to go on to become a school psychologist after college because it would give me the opportunity to work with students with special needs and various psychological and developmental disorders."

"However, as selfish as this sounds, I don't WANT to have to take care of my brother - I always catch myself thinking that he's the older one, so if anything he should have to take care of me."

"Even before I knew the technical name for my brother's condition, I think I was better able to empathize with families we saw out in public who had children who were visibly or seriously disabled and didn't get annoyed or upset when those children started behaving "strangely" or were having a rough time. Being a sib teaches you that people are different and that that's just a part of life."

"Even since I found out about my brother's diagnosis, I've always viewed sibs from an outsider perspective - I rarely equate what my life is like to that of the sibs I know whose siblings have more severe autism diagnoses or other disabilities. I think that's just because for so long I didn't know for sure whether or not I WAS a sib myself, and now I'm just stuck in the mindset that I'm not."

"I feel like, from my skewed perspective, more support services or counseling groups could be made available to sibs of individuals with high-functioning or mild forms of disability - I guess, sibs like me who feel like they're walking the line between normalcy and disability and aren't really sure where they or their sibling/family fall.

***

Sophie from New Jersey - has a twin brother with Autism who is 22 and an older sister with Rhett Syndrome who is 26.

"I was always close with my brother and sister, especially my brother. However, it was mainly behind closed doors. Growing up, I did not feel comfortable talking about them, or integrating them into my life other than when I was at home. We always watched movies together, and my brother and I used to play all sorts of games together, and go on hikes in the woods. I really was close to them both in the confines of our home or when we were with extended family. "

"My brother and I are extremely close. It's partly because we are twins. I feel that I understand what he's thinking most of the time, and I feel he understands me as well. They say that people on the autistic spectrum have trouble interpreting faces and understanding others emotions, but with me, I find he's the first one to know when I'm upset or angry, or just feeling down. He'll come snuggle with me. He just knows. "

"There are also times when he really frustrates me though. He does something called "silly talking." All the time. He just talks and talks and talks. He repeats commercials from his child hood, songs from his childhood, lines from movies, Sesame Street songs, and noises that I have no idea what they are. And he'll do this in public, in silent movie theaters, silent broadway shows, in crowded rooms. It seems like he makes sure he is the loudest sound in the room. And it drives me crazy even to this day."

"With Annie, we weren't as close in my childhood. It was harder to be. She cannot speak and she cannot walk. She understands what we are saying, but she is essentially trapped inside a body that does not do what she wants it to do." 

"I vividly remember going to a show with my family. It was a very quiet point of the show, and all of a sudden I hear a gargling noise. It's my mom feeding her through her feeding tube in her stomach, in the middle of a show! I wanted to disappear. I used to deal by staying silent and suppressing my feelings. Sometimes, I'd tell my parents about how was feeling, and would feel guilt for the feelings I was having about them and would stay silent most of the time. When I was embarrassed in public, I'd escape the situation, and run away. If someone stared at my siblings, I'd deal by glaring at them back. I was very selective about who my friends were when I was younger, and who could come to my house. (I even feel guilty writing all of this now) Things have gotten easier for me, and I recently started to see a therapist to talk about what it has been like growing up with 2 siblings with special needs."

"I honestly do not know too many sibs. I know one. Her brother attends a program with my brother and we together with our families have dinner on Monday evenings. This only started recently, and we really do not talk about our siblings, we just play and hang out with them together. Looking back, I truly wish I had a group of sibs who I could reach out to and could understand me."

***

Thanks to all of our sibs!

Claire

Fitting Together the Puzzle Pieces

It’s always interesting to me when we interview sibs who are both incredibly positive and reflectively negative about their experiences growing up with someone who has a developmental disability. I think something I have been looking for this whole trip has been the perfect combination of solidified good and bad. I think on our last day of interviewing, in LA, I found a woman who exemplifies these traits. We spoke with Liz in LA about her experiences growing up with her brother who is two years younger than she is and on the autism spectrum. She says she wouldn’t describe him as high functioning, but he is verbal, has had part-time jobs, and has a girlfriend.

We've found that the best word to describe the sibling relationship is usually just "complicated" and we talked a lot about that with Liz. "There are a lot of mixed feelings...Complicated is probably the best word for it."

Growing up, she played many different roles in her family. She was the protective, motherly role but also the role of the sister who had a completely separate life from her brother at home. Liz’ reflection on her role in the family was intriguing and very self-reflective. Her parents consistently told her throughut her childhood, “you are his sister, not his mother.” The issue was, Liz didn’t know how to be a sister to her brother.

“I don’t know how to be his sister. I know how to be his parent because what that meant was to take care of him.” She told us bravely about her confusions about her role in the family because she really didn’t understand what being a brother to hers was supposed to look like, as opposed to a parental role that she could easily emulate from her parent’s actions. “What do brothers and sisters do? I have no clue.”

For example, Liz opened up to us about an intense memory she has from elementary school. She told us that she once told her brother that she loves him. And he remained silent. After a while, she asked him if he knew what love meant and he told her ‘no.’ Liz took this moment with her for the rest of her life. . “As a child, that was just profound for me. I am going to grow up making sure that people feel love.” Aside from proving to be the best friend she could possibly be to all of her friends (and she still has friends from childhood and college, to prove her point), she took her brother’s lesson with her in her professional career. Liz is a casting director and she told of the direct impact her brother has on her work. It’s a “great way to connect with people daily and to help people realize their dreams and realize what they want to be doing…the audition is always important to me to make it a safe space…even if they don’t get the job, they go home knowing that they did their job today.” She also spoke on the arts world as a whole, a world she has been a part of since childhood.

The theatre is “a place where there are all these people are feeling things and acting and doing theatre and traveling around the world and that saved my life as far as being able to deal with my insecurities and shame and getting so deep into ‘what are we going to do about my brother?’.” She talked with great warmth about how impactful the world of performance has been on her life. On sibs: “We don’t have that place to freely express ourselves. We don’t have a place to say ‘I hate this. This is embarrassing. I am full of shame. I don’t want to carry this around anymore...I feel so guilty for wanting to be free of this.’”

“When I think about the things I love the most about myself, they are directly contributed to [my brother]. I am absolutely a people person” She went on to speak about her job. “I’m a cheerleader, I’m an interpreter, and all of that is directly because there is this person in my life that I had such a hard time reaching. That was my focus. I am going to be able to reach people. I am going to be articulate. I am going to talk to people about their feelings because here is a person that I can’t really talk to.”

For me, the most touching and inspiring parts of Liz’ interview were when she spoke, eloquently and passionately, about how difficult life with her brother was and is and how awful she feels about feeling that way, something I truly resonated with. “When he is easy, it’s easy to be with him. And then there’s the other side,” the side where he is not an uncle or a brother-in-law, but a brother. A brother who has embarrassed her, given her anxiety about both of their futures, and pushed her to extreme limits emotionally. She told us that as a child, she struggled to talk about him. “It’s not even in our make up to make people feel bad or uncomfortable,” and she didn’t want to “burden” anyone with the unnecessary, especially since she was “fine,” as we have seen many other sibs describe themselves. “I know what he is doing… but I don’t know how he is doing”. She said that she feels a lot of guilt about the disconnect but is not sure how or if she wants to change that. “I should be doing more but do I want to be doing more? It’s always challenging.” She told us that she once heard someone liken having a disabled sibling to having a superpower. The superpower? Being able to read people. “What is the word that it is? It’s just so raw. It’s such a fundamental thing. A part of your growing up, this person”

I’ll finish off this long post with our last portion of our conversation with Liz. We always end each interview by asking the interviewee to pose a question to any other, ever. Liz’ question was unique. “What was your darkest thought?” Though I have suppressed over and over the reality that my sister has affected me in more ways than I can count, Liz’ last question assuaged my own feelings and the feelings of many sibs that we have spoken with about the dichotomy between a sibling relationship and the actualities that are bequeathed within it.

Ellie

Meet Natalie

What I have loved about this project is that in each interview we do, no matter how similar the story may appear on surface level, there are always remarkably interesting and unique insights that the sib is able to articulate about their story. Through our blog, we were contacted by Natalie, an 18 year old, recent high school grad living near Princeton. From her emails, Natalie seemed like a bubbly, kind girl and I was pumped to meet up with her at my favorite tea shop, infiniT.

Natalie has a brother with autism. She has definitely struggled to come to terms with her family dynamic, often preferring to be out of the house except for "showering and sleep, that's it". She told us how despite her physical distance from her brother, he was constantly on her mind as she struggled with feelings of guilt about the opportunities and experiences that she was getting to have that would likely never be a reality for her brother.

Part of this distance also involved Natalie avoiding talking about her brother as much as possible. When we asked her if her friends knew her brother growing up, she responding with the following:

In the next clip, Natalie told us about how her role as a sib has impacted her socially. She touches on the guilt aspect but also the struggle to find people that understood what she was going through. Her clip reminded me of how grateful I am to have met sibs when I was in high school -- that instant comprehension is unbeatable.

For me, the most raw part of her interview was when we asked her what role she plays in her family. Watch her answer:

When our conversation turned to the topic of her connection to any other sibs, Natalie drew a blank. She lamented that she always seems to find out that she knew a sib after the fact. We've seen this in other sibs too, despite this potentially goldmine of common ground between sibs, sibs are rarely in contact with others like them. Perhaps this arises from the stigma around mentioning that their sibling has a disability or simply an uncertainty about what could come out of this unique sort of bond.

Natalie's interview did a beautiful job of illuminating for us how the sibling relationship feels when you're still in high school and sifting through all sorts of other emotional and social changes. I wish her the absolute best in her future and hope that she found her interview experience as meaningful as we did!

Claire

A Story of Successful Support

Back in Chicago, we met with Maureen, a lawyer in Chicago who has an older brother with autism. Overall, Maureen's experience as a sib has been pretty positive. Maureen's story is one of great planning and support. Maureen and her brother Donny, who is just three years older than she is, are very close. "He really adored me, and I felt that growing up." She remembers a time when he was the older sibling, but as she got older, as is the case with many younger sibs, Maureen fell into the role of the older sibling, acting as the babysitter, the caretaker, etc.

Usually, we ask people to tell us what it's like when everything is going well in the family. Instead, we asked Maureen if she had a favorite story regarding her brother, and here's her response:

When asked about challenges she experienced as a kid, here's what Maureen had to say: "I was very lucky. I grew up with a lot of support services."

As a child, she and her brother both attended a camp that integrated the campers who did and didn't have disabilities. She attended from kindergarten to 5th grade and she got to meet a lot of other sibs through the program. She cited the camp as one of the important supports she had growing up. "It was nice to not have to talk about it and just have that acceptance."

As her brother got older, more challenges arose. He became more aggressive and temperamental because of his hormones and would often pull Maureen's hair. When he was 16 and she was 14, he went to a residential school for people with autism, and that was in part because of his aggression toward Maureen. Despite all that, Maureen reiterated that her brother was very loving and she feels lucky that she was able to appreciate that from a young age.

She and her parents speak openly about Donny, and she was really encouraged to be that way. "There was this explicit direction that I should talk about it if I didn't have enough time, didn't have enough attention."

"I feel like I've been very lucky because I've had friends whose parents will not talk about it."

"What I worry about as I get older, is that I don't have other siblings, so I worry about my parents and caring for them, and at some point I am worried about my brother."

"I think that we've had the conversations we could have, but the only thing I wish is that it would be easier to identify another guardian."

Currently, she's on the board of SIBS Illinois and is involved with the chapter, but she isn't directly involved in the disability community. She expressed a desire to become involved and become an advocate.  "I think up until this point in my life, I kind of felt like I did my time and wanted to stay away from it for a little while."

 

Renee

A Touch of Humor

In New York City, we sat down with Annie, who is a student at Oberlin. One of the most poignant things about our interview with Annie is her close relationship with her brother, Lee. From the moment we asked her about him, she couldn't stop smiling.

Something that stood out almost immediately to us was her family's use of humor to cope with Lee's autism. The whole family thinks that Lee is hilarious and they often trade stories about him.

She understands Lee and, like many other sibs we've talked to, often finds herself playing a more nurturing role in the family, even from a young age:

Lee has reached all parts of Annie's life. She told us that Lee is such a fundamental part of who she is, she can't imagine not talking about him with her friends. Though she loves her brother deeply and appeared to have few negative feelings towards him, as a young girl she became interested in theater because it created a space where all the attention could be focused on her, and not her brother. Annie isn't the first sib that's mentioned an interest in theater.

She is also fascinated by people, which according to her, is a result of having a brother with Autism. As an English major, she is interested in the ways that experience can exist outside of language, since her brother's expressive language isn't as good as that of a neurologically typical person. She even recounted a story in which she used the critical theory she was studying in class to explain her brother's condition and experience to a fellow classmate. Because Annie is so close with Lee and the rest of her family, it seems like he's been a factor in most aspects of her life.

Our First Rural Stop: Oneonta, NY

One of the main reasons we are going on this trip is to diversify the records of stories available about sibs. For this reason, we know that we couldn't only stop in big cities and suburbs if we were going to get the complete picture on the sibling experience. With help from a friend of mine who lives near Oneonta, we decided to stop in Oneonta, NY to see the sibling experience from a rural perspective, far from the expansive benefits that are often available in large, metropolitan areas. After the beautiful, yet slightly rainy, drive from Boston to Oneonta, we had the great opportunity of visiting Springbrook. Springbrook is a school in New York that offers several residential programs for students in New York whose school districts are unable to accommodate them as well as day programs. They also offer group homes and other therapy and occupational readiness programs for people over the age of 21. 

We were welcomed at the school by Traci Lanner, the director of the Tom Golisano Center for Autism, and  Madeline Sansevere, the director of Community Services. School wasn't in session when we visited - students were on one of their few short brakes - but the facility was beautiful. They have classrooms of about 6 students each, with one teacher and three assistants. They implement different therapies in the classroom and also offer a variety of pull-out therapies for students who may require extra time or services.

We spoke with Madeline and Traci about our project and about the various programs offered in New York for children with special needs. They explained that New York has excellent services for individuals until they turn 21. School districts unable to accommodate the needs of students will pay for them to attend Springbrook. However, once students age out, the school has very little say in where the individuals may be placed and New York's adult services varies tremendously in quality. The staff and teachers care deeply about the individuals at Springbrook. Springbrook offers to pay for teachers to get their Masters degree in Special Education and they work with SUNY Morrisville to offer classes at Springbrook to make it easier for teachers. They also offer an online program through Endicott University (in Massachusetts).

Check 'em out: www.springbrookny.org

Next, we headed over to the Family Resource Network in Oneonta where we conducted another group interview with three woman, one of whom was only 13. Here are the basic facts about these women.

Meghann is the Executive Director of the Family Resource Network and has a 24-year-old brother with Trisome 8 (a genetic disability) and autism.

Heidi works with her sister who is developmentally disabled at the Main View Gallery in Oneonta which helps provide artistic jobs for individuals in the community that are developmentally impaired.

Manu is a 13 year old sib to one brother who has ADHD and bipolar disorder and another brother who has cerebral palsy, cortical dysplasia, epilepsy, and is non-verbal.

We had a fantastic interview with all of them in one room so we will basically let the clips speak for themselves.

As we have seen time and time again, sibs seem to have these incredible "old souls" that cradle maturity and insightfulness beyond compare. Below, Manu illustrates some of the turmoil that went along with her relationship with her brother.

One of our favorite questions to ask sibs is what their roles in their families were growing up and what they are now. It was interesting to see the range of answers we received from our three interviewees. From Heidi's job of "getting her to giggle" to Manu's role as advocate and future caretaker, we learned a lot from their stories.

Another question we always get a range of answers to regards how having a sibling with special needs affects sibs socially. Below are some their responses.

 Manu shared light on a phenomenon we hadn't truly fleshed out. Many of the sibs that we interview speak about striving for academic excellence in order to "make up for" their sibling's lack of abilities to do. Manu shared some of the issues that affect her personal academics because of the house that she lives in.

One of the main reasons we stopped in Oneonta was because we wanted to see a rural perspective on the disabilities community. We gained a lot of interesting information on what it is like to care for someone with special needs in a small, economically-depressed area. They talked about how difficult it is for people with special needs to gain access to jobs and healthcare. "The threat of being cut-off is always there," Heidi told us.

We are so ecstatic that we got to meet with all three of these amazing women in Oneonta and certainly learned a lot from them.

 

 

Ellie and Renee

A First-timer

Our last night in D.C. we interviewed another recent college graduate who spoke incredibly eloquently about his eldest sister who is 25 and has severe autism. Interestingly, he confided in us that this interview and conversation was the first time he had ever spoken about his sister. For him, and for us, it seemed that our long conversation was a catharsis amid his complicated, busy, exciting life.

Aly was an incredible orator and told his story with eloquence and thoughtfulness. He told us how his family had moved from Pakistan to the United States specifically for the support they could receive for his sister. Unfortunately, they weren’t acquiring the same aide in Pakistan.

Aly also spoke with us about some of the raw experiences that went along with being his sister’s brother.

He also spoke about compartmentalizing his life, a trait we have seen in many other sibs.

One of the most important things we learned from speaking with Aly was how imperative communication is for sibs.

Even after we turned off the camera we ended up talking to him about being a sib, about emotions, about life for well over an hour. He told us how grateful he was to finally be able to talk his story and he was genuinely interested in hearing ours as well. It is one talent to comprehend and understand someone’s experiences, it is another one to empathize with them. To Aly, we are forever grateful for your charisma, your bravery, your stories, and your friendship.

~Ellie

A Researcher and a Sib

The morning we left Atlanta, we got to speak with a young woman who is currently doing Autism research with Emory University. In addition to having an academic interest in Autism, she has a younger sister who is on the spectrum. She was sweet, intelligent, and compassionate and her story provided us with some new perspectives.

I've noticed that so many sibs are more compassionate and understanding than the average individual. Their siblings have taught them to appreciate every person's abilities. Many sibs have also told us they've been called "old souls" in the past and often feel more mature than others their age.

She is a first generation immigrant - her parents are both from China - and she explained that for a long time, her father didn't believe in Autism. They tried many different therapies and diets in an effort to "cure" their daughter of Autism and often pointed out that if she worked hard enough, she could make her autistic tendencies go away. She took it upon herself to show her parents that Autism is a real diagnosis, sifting through blog posts and scientific articles that could teach her more about her sister's disorder.

Her sister was diagnosed at a later age, just before middle school, and as a result, our interviewee is interested in research related to infants, early intervention, and early diagnosis. She studied psychology as an undergrad, but is reluctant to become a clinician for the fear that her patients' stories will hit too close to home. Instead she is pursuing a research-focused degree in developmental psychology and hopes to make a positive impact on individuals and families that way.

She mentioned that her strong academic drive results from her ability to appreciate the abilities she has that her sister does not. Like many sibs we've spoken to, she didn't want to feel as if she wasn't taking advantage of her intelligence and opportunities.

She is very close with her family, despite the challenges and family conflicts that have resulted from her sister's diagnosis. She received her undergraduate degree at UC Berkeley in order to stay close to home, and after several years in Atlanta, she is going back to California for graduate school. Her other sister is abroad in China, but she said when they do have family time, they hang out like any other siblings would.

Renee

Seven Going on Seventy

In New Orleans, we had the great fortune of meeting with one of the kindest, most caring, families we have met thus far. This Louisiana family has 4 children, 3 of which are triplets. One of the triplets has autism, ADHD and a seizure disorder. The triplets are seven. Claire and I spoke with the two triplets while Renee spoke with their parents. Very early on into the conversation, Claire and I realized that we were speaking with some very special children. We began our discussion with the two by asking them to describe their sister. “If you didn’t know her, then I am sure she would make you happy. She would make you laugh,” one of the boys told us. These two showed us true compassion and charisma. Let alone the fact that they have not even begun second grade, the two boys spoke of their sister with the eloquence of men much more weathered with age and wisdom. They told us about how much they care about her and how they feel when they are apart from her. Even at such a young age, they depicted how they worry about her when they are not there to protect her. “We worry a lot. Like, if [we’re] in a different place, even across the street. [We worry] that she could get hurt, or bullied and we won’t be there to help her.” We asked them what it looks like when they stand up for her. “If she’s getting bullied we take up for her.” Wise beyond their years, and even though they expressed wishes to “punch [bullies] in the face,” they use their words to stand up for their sister, and merely explain that she is special. They are truly her greatest bodyguards. Though she has separation issues, it must be wonderful for her to know that she always has these two young men standing behind her with commitment and love.

They also spoke to their family dynamics and how all three of them interact. We asked them if they fight a lot. They quickly assured us, “we’re not trying to fight, we’re trying to tell her, so she can learn.” It appears that many of the activities the boys enjoy, they try to also invite their sister to join. “We love to ride bikes with her. She doesn’t really know how yet so we like to help her.” They told us how she cheers them on at their baseball games and how happy it makes them to see her in the stands. They are proud when she is proud of them.

Part of a family that revolves around family time and togetherness, these two boys truly understand the meaning of family commitment and undivided love. Though, they assured us that they choose their friends wisely. “We have good friends… that are our friends and her friends.” They, like the rest of their family, accept, understand, and appreciate their sister and they want to make sure that the people they interact with do the same. For them, it’s a lifestyle. They brought up the fact that they are hurt when others bully or make fun of their sister. “Boys and girls, and especially adults, don’t know how she is. They don’t know she’s special, what’s inside,” they told us with utter sincerity. What was even more incredible about these two boys was that, though many sibs we have spoken with are embarrassed by or ashamed of their siblings, these two don’t hesitate to stand up for her in any situation. They spoke of an incident on Christmas Eve at church where a woman became very aggravated when their sister was having a fit. She told them that she would take their sister outside and spank her because “she was trying to learn about G-d.” They spoke with astute insight about the incident, recognizing that accepting and embracing their sister is a part of being a family, which is, down to the core, what they are.

From this inspiring family, we learned about the power of true acceptance and familial devotion. From speaking with these two young men, we learned about the potential of the innocent and the vigor of fellowship. The whole family is so incredibly open about their situation as they wake up each day not condemning or complaining about the hand they have been dealt but taking it on with full speed, preparation, and fidelity. I can only aspire to be as kindhearted and thoughtful as all of them are every day of their lives.

“We always love [her],” they told us, and it is as simple as that.

~Ellie

My Conversation With The Parents Of Our Two Little Sages

After talking for just twenty minutes, it’s clear how one little girl ended up with such loving, caring, and protective twin brothers.  When I initially inquired about their daughter’s diagnosis, they explained that though she has mild Autism, a seizure disorder, and ADHD, “it’s just the way she’s always been,” according to Dad. Unprompted, Mom continued, “It’s who she is and I wouldn’t really change it if we could because that would change her. Obviously, it’s difficult at times, but I think we’ve learned a lot of lessons along the way.” Their language provided me with a small window into their parenting approach. Not once did they attach the word “disability” to their daughter. She has a diagnosis, she has strengths, she has weaknesses, and she has a distinct personality, but she is not defined by her disability.

That attitude has carried over into their children, particularly their two sons. The four siblings interact like normal siblings would, fighting at times, yet always loving one another. Dad says “they all have a special affinity to look out for her and care for her.” Though the children all know their sister’s diagnosis and her challenges, they look past all of that and focus on her personality, which has been much stronger recently since her language skills are improving. The boys know she loves Justin Beiber, like her older sister, and that she loves to be social. Their parents have taught them that everybody’s different, that “everybody’s got good things and bad things and [they shouldn’t] single people out because they’re different.” As one of the twins says frequently, “Her brain is different than ours.” Thanks to this attitude, the family doesn’t hold back on activities just because of their daughter’s diagnosis. They go to church together regularly, go out to dinner, and even attend the boys’ sporting events and their eldest daughter’s dance recitals, just like any other family would. They’re “not going to use [her diagnosis] as a crutch” and they’re not going to hide anything. They’re not ashamed of her daughter, only proud. Their mother told me, “I’m the kind of mom where I would tell the whole wide world because I would rather people learn about it. We just feel like by talking about it there will be a better understanding because it is who she is.”

Though the twins are only seven and their oldest daughter is only twelve, their parents have preconditioned them to understand that one day they will be responsible for their sister, and it’s something the siblings have embraced. The boys are still very young and aren’t entirely aware of the choices they will have to face in the future, but given their current bond with their sister, I feel confident that they will remain loyal and protective brothers. One of them once said,  “Mom, one day when she’s living with me, I’m gonna paint her room pink because that’s her favorite color.” I find the bond that these boys share with their sister incredible and inspiring. They’ve learned from their parents that each person has his or her own range of abilities and that everyone deserves to be loved and included in the community.

-Renee